What else can go wrong? Seriously?

[judecorp]

First of all, thank you so much to drainbead for the presents. We have already cracked open the Wildfire sauce. :)

~//~

I am seriously overwhelmed with everything going on with this baby. It seems like when one thing gets resolved, or when we get over the frustration of one thing, something else is wrong. I am /always/ at this doctor or that doctor. I don't even know what to do.

So the reflux is still out of control. She doesn't always cry when she spits up (she cries sometimes, not all the time), but she is like a FOUNTAIN. She spits up so much I honestly don't know if she's digesting any food sometimes. She soaks numerous burp cloths a day, and when I say soaks, I mean that I could wring liquid out of them. Every time I put her on the floor to play, she vomits everywhere - stomach, back, side, it doesn't matter. I can't take her out anywhere without massive puking problems. I went to a cafe with a group of moms and she kept puking all over the floor and I had to keep asking for napkins to clean it up. I went to a park with a mom yesterday and she puked so much on the grass that we were attracting bees and I had to move.

On top of that, what I thought was normal, runny baby poop was actually diarrhea, which means that my baby had diarrhea for over five weeks straight. The pediatrician thinks this is from milk-based formula and told me that we should try soy formula. I have personal issues with soy formula because it is all made from corn syrup and vegetable oil, and I don't want to feed corn syrup to my baby... but she has been eating the soy formula since Friday. She is no longer having diarrhea but her poop is now really funny-colored and when she spits up, it stains everything. And I want to find a way to get her off the soy.

Because she has been spitting up so much, I took her to a holistic chiropractor. She told me that my baby was pale and had puffy eyes and was not getting enough nutrients. It felt like when I went to the acupuncturist all over again. She read me the riot act about how bad soy formula and corn syrup are (hello, I already think this) and gave the baby an adjustment that is not covered by insurance, of course. She wants to see her twice next week to see if the adjustments are helping the reflux.

The day before her 2-month appointment, I noticed that she had a little rash on her arm that looked like something rubbed it the wrong way, so I showed it to the doctor. She had no idea what it was but thought it might be contact dermatitis. A week later it hadn't gone away and there were more spots all over her right arm and hand. When I went to mom and baby group, the nurse who leads the group told me to call the doctor again, and they wanted me to go back in. (Of course.) When I got there, the receptionist actually said, "You again?" (Because of course what I want out of life is to go to the doctor all the time.) So the pediatrician looked at it, called in ANOTHER pediatrician, and neither of them knew what it was and told me to go see a dermatologist.

We went to the dermatologist today. He looked at her arm and then called in a second dermatologist. (I am starting to see a pattern here.) He said that it was broken capillaries (he used a word that began with P that I can say but not spell so I can't look it up on Dr. G) and that since it wasn't from trauma it could be a vascular disease. He said this so casually I almost threw up. He said it probably wasn't, but we needed to watch it and see if it got worse, and if it did I would have to go to a pediatric dermatologist in Worcester. Are you effing kidding me? The second dermatologist said it was probably just some infant wacky skin thing, but she could tell I was freaked out by tossing around the words "vascular disease." She has to go back to the dermatologist in two weeks.

I feel so completely guilty about the fact that my baby is miserable most of the time because she is either throwing up, or hungry because she has just thrown up. I see other moms in my mom group playing with their babies and their babies are looking up at them and smiling and laughing, and my baby is either crying/screaming or looking off to the side somewhere. Or if she's laughing, she is laughing at her toys in her bouncy seat or at the wall. I feel like somehow I created this baby with all of these problems, and that obviously my uterus is damaged because I lost one baby and now have a baby that is struggling. And of course I feel like we wouldn't have the soy/vomit problems if I was able to breastfeed, and I feel ridiculously guilty about that.

Basically I just feel like a gigantic failure as a mom and I feel so miserable that my baby is suffering. She went from losing 13% of her birthweight to needing to be force-fed around the clock to falling off the bed and needing a CT Scan and admission into the PICU to having reflux to taking three different reflux meds to having massive vomiting to now having a mysterious collection of broken blood vessels all up and down her right arm. We have two doctor appointments next week and one the week after and WHO KNOWS what else will come up between now and then.

I just want to throw up.

Comments

[lunamoonwmn01.livejournal.com]

Jude - I rarely get on here but happened to see this post. I had no idea this was all going on. I am so, so sorry and I am sending loving vibes your way. You didn't ask for advice and I don't like giving it unsolicited, but I gently ask - have you reconsidered donor breastmilk? If you have and it's not an option please ignore. I just have heard some of the Milkshare moms say what a difference it has made for their mega-reflux babies. Also, does the organic soy formula have corn syrup? For some reason I thought it had rice syrup or something somewhat better...

[lunamoonwmn01.livejournal.com]

Here you go: http://www.naturesone.com/soy.php This is what our friends use, and no corn syrup or synthetic oils.

[mollysummer72.livejournal.com]

(((Jude)))
You're doing the best that you can with what you have, which is a high needs baby. She knows you love her, and ya'll will get through this.

[judecorp.livejournal.com]

We have some donated breastmilk in the freezer. We don't have much so I give her 1-2 bottles a day so we don't go through it so quickly, because once it's gone it's gone. I put a post up on Milkshare a while back (and paid the stinking fee) but no one responded. Now someone else in my mom group is offering to give me some of her oversupply, which is nice, but I'm leery about giving my baby milk from FOUR different women (what's in our freezer is from two mamas, and we got a couple of bags that we used from another friend).

I just don't know what to do anymore.

As for organic formula, organic soy formula by "Earth's Best" contains 'organic corn syrup.' There's another organic formula company called Baby-Something, and their organic soy formula contains rice syrup but it is a Toddler formula (so it has increased calcium and fiber).

And don't worry about not knowing what is going on, this is the first I mentioned anything other than the reflux.

[judecorp.livejournal.com]

Yeah, that's the one that is a "toddler formula" for whatever reason. You can see it right on the can.

[ladygreyy.livejournal.com]

I'm going to email you something that I was told by someone, and it worked like a charm for her son, who sounds like he had the same exact issues, but it's kinda illegal.

[judecorp.livejournal.com]

Sometimes I don't know if she knows, honestly. I am ready to stop going to the mama group because it hurts me to see all of the other babies making eye contact with their mamas and cooing at them. And then there's my baby, the one contorting her body off to the side, vomiting, and then screaming.

Most of the time I'm pretty sure she hates me.

[judecorp.livejournal.com]

Heh. Okay. BREAKING THE LAW!!!

[judecorp.livejournal.com]

I mean, on a rational level I know I'm not a bad mom. I mean, I'm not abusing my kid or anything like that, and I keep her full of formula to spit up and burp cloths to ruin. (Did I mention they are all stained because she also throws up her reflux medicine and it's purple? Heh.) I am an endless supply of formula-making, laundry-washing, diaper-washing, baby-burping, clothes-changing (hers, not mine. i leave mine looking nasty.). It's an endless cycle. I haven't showered since SUNDAY. I know that I'm doing all I can.

I just know that if on top of everything else, my baby has some sort of blood disorder, I am probably going to seriously lose it. I have hope that eventually she will stop throwing up (I mean, it happens, and babies stop) but I really am at a loss about the blood vessel thing.

[rockymtnhigh.livejournal.com]

I have nothing to add except to repeat what returntoshore said "You may feel like a terrible mom, but you are really such a good one. A crappy mom wouldn't be so sad and concerned, and wouldn't spend so much time trying to figure out what is going on with her child."

and to send you some hugs!

[mollysummer72.livejournal.com]

awww, mama. Just looking at your picture I can tell she doesn't. But I do relate to that feeling, I do. My babies puke for 6 months, then stop. Meaning, both Avery and now Jack puked after every single meal, all over the place- the floor, me, burp cloths. Sometimes I go through 4 or 5 shirts in a day. Then at 6 months-it just stops. our holistic ped told us it would end at 6months and I was shocked to find that it did. I don't know if the same will be true for you. But I will say that especially with Avery, it was very hard for me to bond until that phase was over b'c literally all I did was clean up vomit or shit all day long.

When Gus isn't hurting, her whole disposition will change, I bet. And then you'll see more eye contact and baby coos. And it's not your fault that she's hurting, dude. Even if you were breastfeeding, you might be going through all kinds of elimination diet bullshit to try to nail this down.

It sounds like you might be in need of some alone time, sans baby. Any way you can get away for a while to do something just for you?

[somerandomchic.livejournal.com]

I have heard from some mom who had a babe with awful reflux, who was also one who could not bf, that she added some kind of probiotic to the baby's formula and it REALLY helped. There are probiotics in breastmilk. I think that getting donated milk from multiple moms is probably not a problem.

*puts on child psychologist hat*

Gus does NOT hate you. You are her caregiver. You feed her and comfort her when she is hurting or sad. High needs babies are very stressful - whether they are high needs because of medical things or because they are just super fussy or some weird combination. It is normal for you to feel this way. Also - my DP (who is just lovely, I assure you,) was a super high needs baby. She had many medical needs. Today she is healthy and happy. She is close to her mom and dad. Closer than many people we know. I know her mom was MISERABLE when she was a baby and convinced she was damaging her daughter for life because she told me so. But she was wrong. She was doing what she needed to do to keep her baby as healthy and happy as possible. You are doing the same. Keep doing it. I wish I lived closer cause I'd come over and clean up vomit for you.

[calliopeblogger.livejournal.com]

sending lots of love your way. I cannot imagine how frustrating this is for you guys. It must be just maddening.
thinking of you all.
xoxo
cali

[artjax.livejournal.com]

Wish you much much love and patience.

[mollysummer72.livejournal.com]

It's not really a toddler formula. I emailed their nutritionist when Avery was a baby, and they told me that since they promote breastfeeding for the first year, they don't market their formula to infants. But the nutritional information is identical to that of on the shelf infant formulas. I checked, and then printed out their info and checked it out with the nutritionist at my ped's office as well. Avery drank it (the dairy version) for her first 2 years, and we've been using it for Gigantor (Jack) since birth. It's totally safe. My kids are superhealthy and huge.

[skatured.livejournal.com]

That is a lot to handle -- but I think you are doing the best that you can. It seems like the sort of thing that years later you'll look back on and laugh about what a tough nut your daugther is.

Could the rash be caused by detergent? Soap? Anything like that?

[artemis44.livejournal.com]

Okay, I am SO INSANELY CURIOUS about this! LOL!

[colleenod.livejournal.com]

Anyone can have a high-needs or sick baby. Anyone.

If it happens to you, all you can do is your best. You're seeking out advice from the medical world, holistic practitioners, other moms... what more can you do? What more could any parent do?

I'm sorry. This sounds so, so stressful. You know our friends who offered you their breastmilk? (It might be the breastmilk in your freezer actually.) They had a very refluxy foster baby who was formula fed and now have a highly food-sensitive/allergic baby. Not that you necessarily want advice, but I'm sure they'd be happy to offer any they could. I'm sure they would also just be willing to listen and commiserate. I mention that only because if your mom group is frustrating you because of all the happy, healthy babies in it, it might help to talk to two moms who didn't have that experience, who cared for and are continuing to care for some very high-needs babies... just to know you're not alone. Just a thought. You can ignore it if not helpful.

Sending you virtual hugs.

[kitchenwitch.livejournal.com]

Have you and your doctor discussed further testing to weed out the cause of vomiting? I've run across pyloric stenosis a lot in reading; maybe that is something that needs to be explored.

Did they say the rash was petechiae or purpura? Dr. Sears says it's serious here: http://www.askdrsears.com/html/8/T082900.asp If it IS a vascular problem, or any other problem, they should be fixing it, not giving you a runaround.

You're a good mama, and she loves you. I promise.

[artemis44.livejournal.com]

I'm so, so sorry you're struggling with all this right now... I wish I had some sort of genius answer, but it sounds like you're making lots of good choices and investigating lots of good options... though your alternative care providers certainly do seem to be lacking in the compassion department!

You've gotten lots of good advice here, and I hope you find some good info through it.

As for the multiple donor milks, I've heard of babies who used donor milk from dozens and dozens of mamas, with no ill effects, so perhaps that isn't a concern...

You're doing SO great, and I know that baby loves you! Well, actually, I tend to believe that babies that young don't actually *love* their mamas yet... that comes later, when they differentiate themselves from their mamas... but you provide comfort for her, and she feels safe with you, and that's what we're here for in the beginning. You'll get those happy smiles later, when she's through with this struggle, and it doesn't mean ANYTHING about your relationship with her, and it certainly doesn't mean the other mamas are any better or closer - they just dont' have babies with the same issues/needs right now...

HUGS, and keep us updated/let us know when we can help...

[anitsirk.livejournal.com]

oh holy shit jude. i thought that the whole reflux thing was kind of traumatic and nerve-inducing. i totally missed the falling off the bed and man, when you put all of that shit togather it makes for a horrible babymoon.

you are not a horrible mother, nor are you dysfunctional.

if you want to get out for a while, please let me know. i will be happy to come and watch little A while you go and get a massage or thrift shop or whatever you do to decompress.

as for the petechiae- are they all over or just on her arms?

[lunamoonwmn01.livejournal.com]

Jude, you might want to look into it further b/c my understanding is that they call it "Toddler Formula" only because of their philosophy on promoting breastfeeding. I know MANY moms who have contacted the company and found this out, and subsequently fed it to their infants with no problems.

[aminahfiddler.livejournal.com]

Well crap. Wait you have enough of that :-)

I had a newphew that threw up all the time. He did the projectile kind. When the family came over to vist, we would all fight over who could hold him. It was the only safe place to be around the kid. Now, he's about to graduate high school and go onto to college. He's a healthy well adjusted kid.

It's hard I know. You're doing the best you can and be thankful you have such a great support system.

[judecorp.livejournal.com]

On her right arm only. Both sides of the arm in patches, and on her right hand and right pointer finger (which she sucks on).

[changinglight.livejournal.com]

(((((((((hugs))))))))))